Not to alarm anyone with that pic, but nothing’s exactly, going wrong right now. However, we’ve hit a few bumps on the road.
We’ve heard and made a variety of decisions, come back to them, scrapped them, and made new ones all in a span of just a few weeks. All in all, the end result has kept my treament just as it was in the beginning. We’ve made plans to move forward with my current treatment; gotten great scans; gotten the word to finish 2 more rounds of infusions and be done; learned just after that exciting news that the real hopeful news we were looking for (a successful long term maintenance plan) was actually that my current infusion (meaning that I shouldn’t stop after 2 more rounds as we’d just celebrated, but, at this point, “stay on it until it stops working” (no time line to put a finger on). Whew! We’ve expanded our team, and that puts more heads in the mix, but has also confirmed the genius of my original and current head oncologist, Dr.Saux (the pirate docta) who’s latest treatment is a good one.
Did I mention that within the 2 weeks that I received all of that information, I received chemo on a Monday, had a Gamma knife procedure that Wednesday, flew to MD Anderson on Thursday, flew back the following Monday, and drove straight to the theater so I could continue choreographing the play, Godspell, that I’ve been working on, as I have been for years upon years my second home since 1987. Through this I couldn’t let go of my passion to work on the dancer and ensemble movement as well as continue as costume designer. I’m not one to toot my horn. But there, I said it!
Sidenote:I’m pretty sure I’m just now making up for the time my husband and I first officially met, training for a marathon, although he never trained yet I did.(Ya know, those 17mile Saturdays? Yeah. I did them alone in college on Ohio hills, yet he just ran the dang marathon because he’s Zeus or something! For medical reasons, Docs wouldn’t let me run the actual marathon, yet he ran it like a champ and gets to tell everyone about it. But my months of training are jack squat because… no marathon. Nobody cares about my stinking training they just care that he ran a marathon, in HAWAII no less. So here’s my telling you the “miles I ran” this month! #ducktapemymouthplease #myhusbandisabeastandiamclearlyjustjealous #ievenraisedthemoneyforhim #prettysureheowesmeatriptoHawaii
We’ve had good scans, confusing scans, and even a recent spinal tap to ensure that none of those nasty brain tumors’ cells (remaining 11 brain tumors were removed by Gamma Knife/ non-invasive, non-surgical radiation). However, a spinal MRI at MD Anderson concerned our now expanded team of spots that “might” be cancer cells crossing over from the brain. …. 2 weeks later, GOOD NEWS! Spinal fluid was ALL CLEAR!!!! God is good!!! All the time. Check that off the list. Whew!
However, like I said, all of these ups and downs, running to MD Anderson and back, making plans to revisit again, and now… indefinitely continuing this targeted therapy infusion every 3 weeks? It kind of threw my plans off a bit. To say the least. In fact, the past 4 years of all this mess has thrown my plans off from how I thought I would be living life. FIXIG MY HAIR, playing with my 4 year old, being present more often with my kids in general, spending time with my husband? You name it! We had many plans for trips this summer that we are desperately trying to rearrange constantly for the change ups that pop up whether for new or already scheduled treatments or for my cruddy immune system that just is, well… unpredictable!
I had thoughts last summer of getting it all together, signing up for things at school, and being so on top of my game. I was ready! But instead, I sign up with a big (“hopefully”/”I’m pretty sure I can”) next to my name, and more often have to cancel last minute because my blood counts dropped, I needed fluids, or some other wierd thing I’ve never heard of before that’s apparently common in the “cancer world”. I’ve never heard myself say “Sorry!” so much in my life. I feel like Gilly from SNL!
(In case you have no idea what I’m talking about, here’s a clip below. Ya may find the character and sketch a little odd, I know, but It’s all that runs through my head when I’m apologizing and cancelling/rescheduling/ rearranging our plans).
I know, I know. It’s just life. I get that. It’s a part of learning that we don’t have control of our life. The sooner that we learn that we don’t need to have control, and let go and follow God’s lead more often, the better off we’ll be. Doesn’t mean it’s easy.
How do I handle that?
Some days, I wake up ready to grab my calendar and start figuring out what we can and can’t do and plug away at the dates that I can plan. (Always knowing that anything can change, but at least have something in mind to seize those moments when they come.)
Other days… I can only look at the present week, and I tell my family to please not ask me to discuss anything further. If there’s something that they need me to know about for later in the month to write it down on my fridge calendar or put a note on my office desk, but DO NOT discuss it with me now. I just can’t handle that today. I can only manage THIS WEEK.
Lately, more often I can only handle the current day. If you ask me about anything in the future, I feel totally blind sided, overwhelmed and I get all freaked out like a wierdo. Mostly by merit of the fact that I’ve been so dang busy these past few months, had major ups and downs in major life decisions and results that could’ve entirely changed my actual LIFE as it stands. Not to mention, in the mean time I had to cancel and am still having a hard time rescheduling things that are very important to me,but stuff like “Mommy’s cancer” for the 4th year now, continues to “get in the way”. Sometimes we just laugh about it, makes it feel better to laugh. My favorite medicine, of course! But sometimes, its just so real that I feel the world is spinning so fast that I can feel it, see it, and am knocked over by it. When I know someone’s coming up to ask a question about something I just can’t answer, I search in my pocket for Frodo’s ring hoping to put it on and become invisible for just a moment! Oh the joy! Just sometimes?
Nevertheless, this overwhelming state of being forced to live ONE DAY AT AT TIME, is a gift that God knew I needed. We ALL DO. To live in the present is a gift. It’s intended to be.
It’s a double edged sword. It hurts to feel like you have an “unpredictable stamp” on your forehead. Yet, knowing that I can hardly know the plans for my future week, month, summer, is probably what God’s asking of me. A challenge with 5 children of course. But a challenge that I needed to accept all the more when I accepted the life of a big family.. A life that also was already filled with such unpredictability that is probably what prepared me to be able to switch gears when necessary and persevere whatever the new course is. That’s been my life as I’ve known it for most of my life. Even before becoming a mother. Just as life had its ups and downs within our family growing up. I’m sure you can relate.
So we live in the present. Like it or not. One day at a time. One minute at time. Just as we were intended to. That’s probably why our desire for and struggle for control is equally as stressful as letting go of it. We weren’t meant to control, but rather to surrender to the one who loved us first and loves us most.
The most amazing part in this most difficult task of surrender, I find. And trust me, saying and doing it are two entirely different things. I’ll be the first to admit. I can give it all to God and take it right back within the same moment in my own inability of what exactly He would do with it if I gave it to him? But then I remember who He is. How could I claim to possibly do this any better?
I make myself repeatedly tell God, every morning
I surrender my body.
I surrender my family.
I surrender my husband.
I surrender my children
I surrender my control.
I give my life to you.
I trust in you.
That prayer has gotten me through every day for nearly 4 1/2 years now. I should’ve started it many years before then. It shouldn’t have taken cancer for me to say those words. And, because I will always hold on to HOPE, WHEN I am healed of this nasty disease, I will continue this prayer. Because knowing that someone bigger than me, wiser, and who knew me first, loves me most, and wants more for me and my family than I can ever imagine is actually running this show and looking out for me…. any blink of fear fades away and my HOPE builds all the more. Hope that my children will be safe. Hope that husband will stay strong. Hope that ..
“every little thing is gonna be alright!”
It’s a roller coaster with lots of ups and downs, twists and turns, but although I may have moments of screaming at the top of my lungs, I also find many points to throw my hands up and smile, laugh, look at all that’s around me, and enjoy the ride. I HOPE to teach my kids the same. I think we’ve gotten a good start.
You never know what’s coming around the corner, it’s unpredictable, but it’s the ride we’re on. There’s no giving up and getting off, just holding on together and riding it together… all the way through.
I haven’t mastered any of this. I don’t claim to. Like I said, it’s just ONE DAY AT A TIME.
Thank you for your support.
Thank you to all those who’ve sent meals.
Thank you to all those who have and who are currently helping with fundraisers.
Thank you for the emails, texts, cards, and many messages and notes of your love, prayers, and concern.
Our family is so eternally grateful!
YOU ARE GOD’S HANDS AND FEET when we could be drowning.
God bless you all and thank you for being a part of our Team.
For info on HOW YOU CAN HELP US TO KEEP PAYING IT FORWARD and help FAMILIES IN CRISIS, click on the button/link below for our non-profit, BUNA’s HOPE.
You’ll find all the info you need to donate funds or send items for our care packages (BUNA BOXES). We welcome you to look at the info for sending us details about families in need so that we can get a BUNA BOX and send them a box of joy and HOPE for their family!